CT scan and CEA test results

That cancer patient I also call my husband is a bit lazy again, asked me to report the good news! So here's a brief recap of last Thursday.

Week 29 Jan Arne had the CT scan and last Wednesday the CEA (cancer marker) test. On Thursday we were to see the doc about the results. We were two minutes late as usual. The doc was at the nurse's office (probably asking where we were) and when we passed the office the nurse yelled to us to the corridor right away "good news!" and smiled.

It was a new doc again, and older cancer specialist this time, always nice to hear new insights into things. The CT report was not very good this time, I mean it was not well written, but the main thing was that the news were good. According to the report there were no longer any metastases to be seen on the left lobe (one 1 cm one in May). The report also said that the changes in the right lobe were not significant, and there were measurements only for Mr Big (the biggest tumour). It has shrunk by a couple of millimeters.

But together with the CEA value which was now 65 (in Feb 108, in May 178) even the "insignificant decrease" was good news, the new chemo regime is working. This doc wants to take the CEA every three weeks now. He said that it is in a way more accurate than the CT scan. I didn't ask but I guess because the tumours don't necessarily shrink as fast as they are dying so you can't really see in CT which parts of the tumours are necrotic = dead cells and which are active cancer tissue.

We were planning to go to Norway week 33 and we asked if the treatment that week could be postponed a few days, but now JA is not actually sure if he wants to travel because of the swine flu... so let's see.

Renovations done

Thank you wife for keeping up this blog during my absence!

Good news! The kids room is now done with walls and ceiling painted, new floor, all lists renewed and a new IKEA closet assembled. If there will be another renovation project in future, we're definitely going to get some carpenters in.

I was a little unlucky and had to go on a sick-leave in between. I came down with fever and a throat infection just as we had put the kids to grand-parents to free up some time for the renovation. I had to check in at the hospital but the doctor sent me back home after a check-up and blood test. I spent the weekend watching Seinfeld on DVD while waiting for the fever to pass. After the weekend I visited a doctor again and she said I now had developed pneumonia. I just finished the antibiotics and feel otherwise fine.

And something not related to diseases. A friend of mine took me rowing on one of the lakes earlier this summer. While coming back we enjoyed a spectacular sunset as you can see in the attached photo.

Two hospital visits

Last week on Thursday Jan Arne's platelets were back over 100 and he received Camptosar and Erbitux and started two weeks of Xeloda.

At weekend we went to my parents' place and from there we drove to visit a friend's family who moved away from Tampere last year. They have almost same age kids as we do so us parents could just relax while kids were playing nicely by themselves. In theory.

After the visit we drove back to Tampere with Jan Arne and left the kids with my parents. The plan was to renovate their room while they are gone. Well, things don't always go as planned. The room was of course a lot more work than we thought even though we thought we were being realistic. The walls are still waiting for the first coat of paint and the old floor is there, new floor still in packages. I was supposed to go to my parents tomorrow while Jan Arne would finish the room, or as much as he would have energy for, as today was the chemo day again.

But the platelets were back under 100 again so they dropped Camptosar and gave only Erbitux, but told him to continue with Xeloda. Nice for him (less side effects, more energy for renovation) and for cancer (less poison). Except now he is back in hospital with some fever (anything above 38,5C and he has to go to hospital and he had 38,8C) and sore throat.

So I guess this is it for the blog today and off to do some painting.

(My pet peeve for today: why is it impossible to hire anyone to do the painting and the floor in this supposedly-recession-time?? I thought renovation guys didn't have enough of work. Somehow we didn't get anyone to be interested in coming here to do the room for us until August).

Update II

Can't think of a good title this time. Just a brief update from the wife again.

So we figured out the treatments are supposed to run like this: camptosar and erbitux for two weeks, then erbitux alone the third week, and then back to both campto and erbitux. Xeloda always starts for two weeks (as pills) when camptosar starts.

And as soon as we had figured this out, Jan Arne's platelets dived again last week, and he only got erbitux and had to cut xeloda short too, only took it for a week.

Tomorrow (Wednesday) there's another blood test and on Thursday, we are again clueless if it will be campto as well if the platelets are back up, or only erbitux. And who knows about xeloda.

On the positive side, the nausea and stomach cramps caused by camptosar are now under control with medication so hooray for that, in case he gets campto this week.

Then again, the summer is finally here, http://www.fmi.fi/saa/paikalli.html?kunta=Tampere, as I read it now it says "25, 26, 28, 28, 28" for the next five days. So we'll just try to keep cool until Thursday in many ways.

Otherwise Jan Arne is doing fine, he went for a long bike ride today etc. His hair has started to come off finally, but then again that does not really influence his ability to cycle... By the way, I guess we have forgotten to share that we got some results that Jan Arne's cancer is not hereditary (HNPCC). Which reminds me we had Jan Arne's sister here for over a week and we had a great time, despite the lousy weather!

If someone is interested in reading some cancer news here's a pretty interesting bit:
http://www.cancercompass.com/cancer-news/1,15813,00.htm

Jan Arne, next time it is your turn to write!

Update

It seems the Wife has taken over here! Jan Arne is ok but busy with work as it is the last week before his summer holiday.

Last week, contrary to what we thought, Jan Arne did not get Camptosar, only Erbitux. As he finished Xeloda the same day, it has been a bit easier week for him, and the appetite is back too. Interestingly enough as well, the platelet count keeps rising. Other blood test results have been ok too, only leucocytes had dropped a bit below the normal margins, and infection values were up a bit. The Erbitux rash is still there, oddly traveling from one body part to another (from face, neck, shoulders, to arms, to chest etc.). Medicine and biology sure work in mysterious ways. Other than that, business as usual.

Tomorrow (Thursday) is the day for the doctor again, and for probably starting another round with all of the three medicines. Guess we have to ask in more detail about the planned schedule :)
And on other fronts, on Friday we will get a visitor from Norway and on Sunday a visitor from Austria and from Monday both Jan Arne and I will be on holidays! Sounds like a plan :)

Rash and other fun stuff

Jan Arne has not apparently had time (or energy) to send an update, so the wife here again, in case someone out there is wondering how he is doing.

Jan Arne has now had two treatments with the new combo, third tomorrow. They give Erbitux and Camptosar every Tuesday, and Xeloda Jan Arne eats twice a day for two weeks. The side effects came almost immediately after the first dose. Nothing huge, but these poisons are obviously not as much fun as the earlier ones. The rash on face and scalp is quite bad, but not as bad as I thought it could be. For Jan Arne of course it is annoying, as it can be quite itchy. He has not really had nausea or diarrhea but he's not been 100% either, not eating as well as before. And he's been quite tired. All in all, I bet life without chemo would be nicer.

On the positive side, the rash is supposed to be an indication that Erbitux is working. Also, in the blood test last week, a week after the first dose, the platelet count had gone up to 118. So if the doc was right and it is the tumours that kept the value low, a higher platelet count sounds good, maybe it indicates that the new combo is kicking the tumours' butt.

News from other fronts: Yes Norway won the Eurovision Song Contest, and Yes I voted for Norway too, and Summer is in Finland: 29C yesterday and 10C predicted for Thursday, what can be more Finnish than that.

The New Combo

The Wife here updating the blog for a change.

Today we had a doctor's appointment again, this time with the "head guy" so we were happy. The platelet count was still below 100 but the doctor said that now it looks like the disease itself is keeping it low. This means that the tumours may secrete something that keeps the platelet level low. However, as it has been low but on the same level for a while now he said the treatment can be started again so they started today.

The new combo is irinotecan (brand name Camptosar) and cetuximab (Erbitux) as injection, once a week this time, and the old friend capesitabine (Xeloda) as tablets for two weeks. The set of most common side effects from irinotecan is nausea, diarrhea, hair loss, and from cetuximab an acne-like rash in face and upper torso. There are effective medicines against nausea and diarrhea, and the rash may be milder with proper body lotions, and with hair we will just do the regular summer cut for Jan Arne already. But keep your thumbs up or pray, whatever suits you best, that the side effects will be on the mild side. There is, however, a chance he will finally start looking a bit different though. This far you have not been able seen at all that he has cancer.

We also asked about the CT scan results as the doctor last week could not say much about them. This is what the "head guy" replied: The unclear borders of tumours indicate that they may be growing (especially interpreted with CEA value). The mention in the CT scan report about lymph nodes next to liver being small means that they are normal size but that does not mean there wouldn't be any cancer cells in them. And about the number of tumours in liver: the six whose measurements we have been following (sixth one supposedly no longer seen in the most recent scan, according to the radiologist report) are the biggest and measurable ones, but that does not mean that there would not be other smaller ones in the liver as well. So no positive news really but I guess we already knew the answer.

Let's just all now hope (and keep our thumbs up, and pray, again whatever suits you) that the new combo will do the deed again and kick the cancer back a few notches! It is indeed a battlefield, no wonder they use a lot of war metaphors when talking about treating cancer.

Change

The doctor called me up this afternoon as she promised. They had discussed my situation in the department meeting this morning. They had come to the conclusion that the current chemo regime is no longer working as the tumours have not decreased in size significantly since the February CT scan. My new regime will contain only one drug which is marketed as Camptosar. I will get it as IV once a week for four weeks in a row. Then there will be a two weeks rest period. The plan is to start it next week if my platelets count is good enough.

I asked why they wouldn't combine Camptosar with Avastin and she said it is because of my the situation with the platelets as Avastin could also have a negative impact.

In yesterday's discussion with the doctor, my wife asked about a drug called Erbitux that could be combined with Camptosar. The doctor promised to bring this up in the department meeting. In today's call she said that they will add Erbitux to my new chemo plan only if my cancer cells "express EGFR". Actually, I've no clue what this means even after reading about it. They will use the biopsies of my tumours taken last summer to determine EGFR expression. If there is a positive finding, they'll put Erbitux in as well.

The Eurovision Song Contest festival is on. My wife is a big fan. I would say there's one country this year that has got something special. It's Armenia with the song "Jan, Jan". According to the Norwegian media, Norway is again among the favourites.

May scan

Yesterday I was supposed to finally start the now twice postponed treatment round, but the platelets count had further declined compared to last week. The value was now 78. The nurse said they would postpone the treatment with another week.

Today I had the doctor's appointment where I got to hear the analysis of last Friday's CT scan. I was quite nervous this time and expected to hear some negative news. I had the increased CEA value particularly in mind. The senior doctor I thought I was going to see had taken a one week holiday (!). His deputy was one of the young doctors we have met before.

The situation in the liver is roughly on the same level as in February. The strategic measures are now:
* 3,0cm x 2,7cm (in February 2,7cm x 2,6 cm)
* 6,9cm x 4,5cm (in February 6,7cm x 4,2cm)
* 6,6cm x 2,8cm (in February 7,6cm x 3,7cm)
* 3,1cm x 2,3cm (in February 3,1cm x 2,2cm)
* 1,2cm x 0,9cm (in February 1,1cm)

The sixth tumour they measured in February to be 6mm in diameter can no longer be seen. The report also mentioned that there are no new tumours and that some measurements were difficult as the edges of some tumours were unclear.

As a summary, some of the tumours are still big, some have increased in size, some are the same size as before and some have shrunk. The doctor didn't give a clear conclusion but she said it may be the current chemo regime is no longer working as the tumours have not decreased in size significantly. There will be a department meeting tomorrow morning where my case and treatment plan will be discussed. She would call me in the afternoon and give me an update. The senior doctor will be back on Monday and probably make the final call.

We also discussed the issue with low platelets count. The doctor said their practice is to wait until the body recovers and starts producing platelets normally. Re-fill of platelets is done only when the value goes below 20 which means the situation is life threatening. We said we are a little worried about this as it has now been three weeks since I stopped eating the Xeloda pills and five weeks since last dose of Avastin. We also asked if there could be other reasons for low platelets count than the chemo. Could the cancer for example have spread to the bones where the platelets are produced? The doctor said no as such a situation would be seen in other blood values and they all are fine. We agreed I'll wait for the next blood test (Friday or Monday) and cross my fingers that the count is up.

Vappu

I checked in at the hospital yesterday morning just to find out that the platelets count in yesterday's blood sample was still too low to start another round of chemo. The value was now 87 so it's roughly at the same level as one week ago. The nurse consulted the doctor who postponed chemo by yet another week in an attempt to give the body more time to start producing platelets normally.

I asked to see the doctor to hear his analysis of the situation but he had another patient. I didn't want to hang around and wait as I have an appointment with him next Tuesday for the CT scan results, so I left.

This weekend there was the traditional May Day or "Vappu" celebration in Finland. I looked up in Wikipedia and found a page on Walpurgis Night where there's a pretty good description about the Finnish traditions. This is the time of the year when everyone drinks home-made mead ("sima") and eats home-made doughnuts and when students from the technical university take over. You see them wear overalls and white student hats and run around doing various rituals. Though the rituals seem to vary from place to place, a common nominator is that there's a bit of alcohol involved. In Tampere, the dipping of first-year students into the river downtown is a popular show. Another tradition is that everyone that has completed high-school will take their white student hat on and get downtown.